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Old 07-05-2017, 11:24 AM   #1
nide44
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Hi- I haven't been on here in a while, but I thought this may be interesting, after 25 years of living with PN- I've developed topical and deeper syx on my right outer thigh. Piercing, ripping, burning, itching- you name it. It sometimes feels as if my skin is being flayed off of me
or I'm being scalped on my leg.
This has been going on for about 12 mos.
I have a new neurologist who feels it may be lower back nerves being pinched, so I get epidural injections 2 x or so per year for Sciatica, but he now gives me epidural in different area for the thigh. Hasn't seemed to help much.
I also have developed 'stocking' syndrome(?). Both feet feel as if they are wrapped tightly(to the point of squeeze hurt and numbness) with an Ace type bandage. Feet are not swollen or discolored but feel so.
Any observations? Similar Syx? Successful treatments?
Inquiring minds want to know.
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Old 07-05-2017, 09:08 PM   #2
mrsD
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Welcome back,Bob!

I am on a tablet in bed and it will be easier on my desktop downstairs. So I will answer better tomorrow.

Sounds like MP..which I had ..yes very painful and mine was from a C section surgery.

I've had two falls on stairs so I don't use them late at night when
I am shakey.
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Old 07-06-2017, 07:43 AM   #3
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Hip Pain in Athletes - American Family Physician

This link is very good for illustrating MP:

Illlustration 2B shows this nerve well.

This nerve comes out of the L4 or L5 (there are variations for this anatomy) , enters the back of the abdomen and exits in the upper thigh under a tight ligament.

Tight belts, tight clothing (sitting in tight pants/jeans), invasive procedures, arthritis and spurring in the lower back , surgeries etc.

This is our MP forum...it is not really busy so it is easy to find posts there. MP only affects sensation on the side of the thigh across the front. It does not serve the back of the leg .
or affect motor nerves. But it does arise from the same area of the spine.
https://www.neurotalk.org/forum76/

I avoided surgery for it, and drug therapies. Lidoderm patches finally became available, and I tried those with great success.
I placed 1/2 patch at the top of the thigh where the nerve exits the abdomen and after daily use for 2 weeks, the nerve turned off and I have had a remission since then. Heat, from any source will set it off again, so avoid hot tubs and heating pads.

Today there are new Lidocaine patches OTC with 4% lidocaine in them (that is 1% less than the Rx ones). You can try yourself using them or using the cream/lotion at that ligament area to see if it will work for you too. Aspercreme Lidocaine and Icy Hot now make the OTC lidocaine. They are relatively new. I use the OTC versions now BTW for many PN issues.

I am going to bring up another thing. Invasive spinal injections can be problematic. Your treatment for the sciatica may have injured the lining of the spinal cord. It is possible that the epidurals damaged the spinal cord, so you can Google that.
I'd recommend that you demand to see the drug container used for your epidurals. Do you recall the horrible situation about the compounding pharmacy in Massachusetts which manufactured generic Medrol injection under non sterile conditions and many people were injected with fungal spores and many died and others permanently damaged. Doctors bought this product to save money and ended up in a huge mess.

I am so sorry you are suffering so... Glenn has had some MP issues too, so you might PM him for his experiences.
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************************************

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Weezie looking at petunias 8.25.2017


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Old 07-07-2017, 09:12 PM   #4
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Thanks for the info Mrs. D.
I seem to be dealing with awful groin pain which appears might be the iliopsoas bursa for over a year now. I had hip X-rays of both hips ordered by my PM last year; no arthritis found. My GP thinks this could be caused by the iliopsoas bursa because of the area I indicate my pain coming from.

I have "potty"issues(rectal cancer) along with pain meds so some frequent straining daily aggravate it. (I take Miralax daily.)
Right now I am sitting with ice packs between both groin areas (left is worse) which seems to help. My GP suggested the possibility of getting guided injections into the bursa which I have not had done. Not even sure who to see since my GP did mention a physiotherapist could possibly do the injections into the iliopsoas bursa.

PT is problematic since former lumbar spine fusion, ventral incisional (3) hernias repaired a year and half ago, along with PN would aggravate many of the conditions; especially the large additional incision after the hernia surgery. Also deal with abdominal pain since the surgery. Actually the hernia repair and groin pain seem to happen shortly after the surgery. I checked with the surgeon last month thinking the hernias may have recurred. He said they hadn't.

I was interested in your mentioning having used the Lidoderm patch in the upper thigh/abdominal area. Do you think the nerve problem you were dealing with could possibly be connected to the iliopsoas bursa area as the culprit???

I'm afraid this post appears to be all over the place and may be a bit confusing. Just reaching for any possible alternatives.

Thanks for any suggestions/input.


Gerry
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Old 07-11-2017, 04:52 PM   #5
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Quote:
Originally Posted by ger715 View Post
Thanks for the info Mrs. D.
I seem to be dealing with awful groin pain which appears might be the iliopsoas bursa for over a year now. I had hip X-rays of both hips ordered by my PM last year; no arthritis found. My GP thinks this could be caused by the iliopsoas bursa because of the area I indicate my pain coming from.

I have "potty"issues(rectal cancer) along with pain meds so some frequent straining daily aggravate it. (I take Miralax daily.)
Right now I am sitting with ice packs between both groin areas (left is worse) which seems to help. My GP suggested the possibility of getting guided injections into the bursa which I have not had done. Not even sure who to see since my GP did mention a physiotherapist could possibly do the injections into the iliopsoas bursa.

PT is problematic since former lumbar spine fusion, ventral incisional (3) hernias repaired a year and half ago, along with PN would aggravate many of the conditions; especially the large additional incision after the hernia surgery. Also deal with abdominal pain since the surgery. Actually the hernia repair and groin pain seem to happen shortly after the surgery. I checked with the surgeon last month thinking the hernias may have recurred. He said they hadn't.

I was interested in your mentioning having used the Lidoderm patch in the upper thigh/abdominal area. Do you think the nerve problem you were dealing with could possibly be connected to the iliopsoas bursa area as the culprit???

I'm afraid this post appears to be all over the place and may be a bit confusing. Just reaching for any possible alternatives.

Thanks for any suggestions/input.


Gerry
p.s.
Part of Mrs. D response "hit home"....Apologize for cutting into the thread.
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Old 07-12-2017, 05:19 AM   #6
Rosie33
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Heart Mrs. D, please...

Quote:
Originally Posted by mrsD View Post
Hip Pain in Athletes - American Family Physician

This link is very good for illustrating MP:

Illlustration 2B shows this nerve well.

This nerve comes out of the L4 or L5 (there are variations for this anatomy) , enters the back of the abdomen and exits in the upper thigh under a tight ligament.

Tight belts, tight clothing (sitting in tight pants/jeans), invasive procedures, arthritis and spurring in the lower back , surgeries etc.

This is our MP forum...it is not really busy so it is easy to find posts there. MP only affects sensation on the side of the thigh across the front. It does not serve the back of the leg .
or affect motor nerves. But it does arise from the same area of the spine.
https://www.neurotalk.org/forum76/

I avoided surgery for it, and drug therapies. Lidoderm patches finally became available, and I tried those with great success.
I placed 1/2 patch at the top of the thigh where the nerve exits the abdomen and after daily use for 2 weeks, the nerve turned off and I have had a remission since then. Heat, from any source will set it off again, so avoid hot tubs and heating pads.

Today there are new Lidocaine patches OTC with 4% lidocaine in them (that is 1% less than the Rx ones). You can try yourself using them or using the cream/lotion at that ligament area to see if it will work for you too. Aspercreme Lidocaine and Icy Hot now make the OTC lidocaine. They are relatively new. I use the OTC versions now BTW for many PN issues.

I am going to bring up another thing. Invasive spinal injections can be problematic. Your treatment for the sciatica may have injured the lining of the spinal cord. It is possible that the epidurals damaged the spinal cord, so you can Google that.
I'd recommend that you demand to see the drug container used for your epidurals. Do you recall the horrible situation about the compounding pharmacy in Massachusetts which manufactured generic Medrol injection under non sterile conditions and many people were injected with fungal spores and many died and others permanently damaged. Doctors bought this product to save money and ended up in a huge mess.

I am so sorry you are suffering so... Glenn has had some MP issues too, so you might PM him for his experiences.
Mrs. D, I would like to try the 4% lidocaine patches for my PIN. Would you please give me your recommendation as to which brand to buy. I have tried to research it but am confused with so many different opinions. I want something I could put on the top of my foot and on the outside of my shin. Also, is it best to get the ones with or without menthol, and are there any that are transparent in color?
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Old 07-12-2017, 08:47 AM   #7
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Rosie, I suggest you start with the lotion/cream first.
This is the website for the Aspercreme lotion/cream:
Aspercreme Pain Relieving Cremes and Gels: Pain Relieving Creme with Lidocaine

Here is the website for the Aspercreme version of the patches:

Aspercreme Pain Relieving Cremes and Gels: Pain Relieving Creme with Lidocaine

These have aqueous ingredients in the gel portion in the patches. Similar to the Rx version, and this gel is not a good adhesive and the weakest
aspect of the patches.

The foot and lower leg would need good contact so I would use the cream/lotion. Also where you feel the pain may not be the pain generator. Your foot may be referring from your ankle or knee. The Salonpas Lidocaine, Icy Hot are other versions and you can look those up yourself.

I don't think there is a transparent patch for lidocaine.

We use the Aspercreme brand Lidocaine cream and I find it very effective, inexpensive and easy to apply.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

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Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 07-12-2017 at 11:04 AM.
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Old 07-14-2017, 04:33 PM   #8
en bloc
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Rosie,

As MrsD said, the pain in your foot may be referring from another area...like the knee. Keep in mind that much of pain from PN comes from the spine, so applying the patch in different locations (including the lower back) may be helpful.

Also, have you seen a podiatrist? I have PN in my feet but new pain on top of my right foot was getting bad and seemed uncharacteristic of PN. But I wasn't sure, so went to a podiatrist. After simple xrays in the office, it appears my entire foot is collapsing...literally. So, if you are not sure what is causing your pain, or the patches don't help even when placed in various locations, consider seeing a podiatrist. It might be something different, all together. Just a thought.
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Old 07-14-2017, 07:02 PM   #9
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Wow, en bloc, I really picked up on the 'foot collapsing' part of your post. I have profound PN, and my legs have atrophied (calf muscle shrinking), but ALSO I have 'felt' that my feet were literally collapsing.

I didn't quite put it into those words, in my mind, and I haven't mentioned it to any of my myriad of doctors. Because what can I do?

I wear braces most of the time, but when I take them off, I can see that my feet are 'smaller' 'flatter', the bones stand out tho' even the bones seem to be shrinking.

When I walk barefoot (to the bathroom at night) with my walker, I can sense that my feet are much flatter and that the cushioning on the bottoms is disappearing.

I feel like Alice in Wonderland, as I wave farewell to parts of my body. No magic mushrooms however.

Just PN and all the attendant joys.

Regards, ElaineD
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Old 07-15-2017, 06:50 AM   #10
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Quote:
Originally Posted by en bloc View Post
Rosie,

As MrsD said, the pain in your foot may be referring from another area...like the knee. Keep in mind that much of pain from PN comes from the spine, so applying the patch in different locations (including the lower back) may be helpful.

Also, have you seen a podiatrist? I have PN in my feet but new pain on top of my right foot was getting bad and seemed uncharacteristic of PN. But I wasn't sure, so went to a podiatrist. After simple xrays in the office, it appears my entire foot is collapsing...literally. So, if you are not sure what is causing your pain, or the patches don't help even when placed in various locations, consider seeing a podiatrist. It might be something different, all together. Just a thought.
I do see a podiatrist whenever a callus appears. I got some Aspercreme Creme with Lidocaine, and it did help with the pain at the top of my foot and ankle. The pain on those places was an intermittent zap. I got the roll-on, and that took care of it. I will ask for xrays next time I go even though I don't want to hear that my feet are collapsing. Did the podiatrist say that the foot collapse was due to PIN, and what if anything can be done for it?

I had xrays of my spine awhile ago, and the doctors didn't think there was anything that would be causing my PIN. My PIN started in my toes about 25 years ago, and progrressed slowly throughout the years. It's not until this year that I have the burning and zaps in my ankle and sometimes on the tops of my feet where my third and fourth toe meet. When I wake in the morning is when I feel like my feet are wrapped tightly with an ace bandage until I stand and walk. Birkenstock Mayari sandal is my life saver. It has the toe hold which helps to lift the front of my foot when I walk. My feet are so much better throughout the day when I'm up and walking. My husband and I walk the Mall at least 3 times a week which takes about 45 minutes to walk about a mile.

I've had all kinds of tests and the only thing that I was told was I have small fiber PIN. I was a heavy drinker up until a year ago. I stopped drinking completely this year and thought maybe it would help with PIN but it doesn't seem to, in fact it seems worse. Maybe when I was drinking I didn't notice the symptoms the way I do when sober. I gave up the booze and will never take another drink. I can't imagine being in that state and losing my balance, falling and breaking a hip or worse. I called myself a heavy drinker but now I admit to being an alcoholic.

This year my daughter got me to eat healthy. I gave up diet drinks, most sugar and anything made with white flour. I'm eating whole foods and no packaged or canned foods. She tells me if I can't pronounce any ingredients listed on labels then I shouldn't be eating it. I've lost 30 pounds within this year by eating this way. I'm loving it because it was mostly all belly fat. I'm still not on any meds for PIN, and I will continue to do so until I get desperate with the pain. For now it's mostly the burning sensation and the $%^@%$ zaps that I mostly have to deal with.

I will be 79 in January, and I worry if I'm going to be able to keep walking. So far I'm much better during the day than at night thanks to my Birkenstocks. I worry that if I'm ever bedridden and not able to walk, I will suffer with the pain of PIN because I need to wake up, stand, put my Birkenstocks on, and start walking! For now at this point in time, I'm able to get at least 6 hours of painless sleep each night, so I will count my blessings and take it one day at a time.

I love this group and everyone in it.
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